Anyone have Cutaneous T Cell Lymphoma?

I was diagnosed with CTCL in November of 2022. I have been told I am in stage IIB. I have been prescribed methotrexate, steroid creams and phototherapy 3X a week. In January of 2024, I am now receiving a weekly shot of pegasys. I’m trying to get an understanding of what my life expectancy is and to understand how this disease may or may not progress. My understanding is that this is a chronic disease and treatment will be life long. Can anyone provide any guidance?

@beeclee, I'm tagging you on this discussion so you can meet @dws1968 who was also diagnosed with Mycosis Fungoides.

You mentioned you will be getting light therapy. Are you referring to phototherapy?

@beeclee, I'm tagging you on this discussion so you can meet @dws1968 who was also diagnosed with Mycosis Fungoides.

You mentioned you will be getting light therapy. Are you referring to phototherapy?

Hi All,

I was officially diagnosed with Mycosis Fungoides several years ago, after several years with symptoms and not knowing what I had and just guessing at what it could be and even under a doctors care. Until, finally I saw a Dermatologist and then forwarded on to a local Cancer Research clinic.

I have a rash all over my body, worse in someplace than others and those places are usually my butt and the backs of my legs (where i sit) and my feet and lower torso, but again all over at some degree.

I am searching for feedback from everyone possible on your experience and particularly how you manage your skin for this on a regular or semi regular basis.

I feel like the that heat and pressure seem to aggravate or cause flare ups. as mentioned above worse on my backside and feet, depending on foot wear, anytime I wear a dress shoe, leather, more heat, long days like that.

Seems certain foods aggravate it. and causes more itching on top of the rash. Chips in general, certain cookies (brands of foods?)

Anyone have input on how alcohol and canabis effect symptoms or levels of aggravation?

I will leave it at this for now. New to the group as well so hoping to hear some good advice or just feedback.

Thank you,

Thank you for your concern. It is nice to know that I am not alone. I always say that I have been very lucky as there are a lot of people out there that have bigger problems than me. I live in Franklin, IN. Since SS is my only source of income, I do have to watch my spending. Unfortunately, I have always had to put off any health care for myself. I am twice widowed with both Wifes dying of major diabetic complications.
I must say that this condition is somewhat confusing to me. The final diagnosis from my dermatologist was Sub-cutaneous T-cell Lymphoma. I would assume that 'Sub' would mean under the skin. I think this was an error on her part. Also confusing is whether this is a cancer or not. Since cells are being changed and told to attack skin, it would sound like a cancer tome. And yet, I read that this is not a skin cancer:
Cutaneous T-cell lymphomas: These lymphomas start in the skin but are not a type of skin cancer. They account for about 5% of all lymphomas and include conditions like mycosis fungoides and Sezary syndrome23.
Regarding transportation, I have just changed my health plan this year and have not had a chance to try it out. My former plan included transportation, so I made an appointment and the day before my appointment they called and said it was not available in my area. I had to cancel. I have one daughter, two young adult granddaughters and son-in-law all with their own problems and too busy for me. Whatever, life goes on and you deal with what life throws at you. There is always tomorrow until there isin't.

I am so sorry. Getting the light treatment at home was a major difference and I was lucky because I drove the insurance company crazy until they agreed to pay. I as also fortunate in my diagnosis as my dermatologist diagnosed it when I basically had few symptoms just a suspicious lesion in my leg. Where do you live? Are there transportation services? Can someone drive you? What is the oncologist saying? No worries about long posts. Loneliness is terrible so feel free to reach out.

While I was still able to drive, I was being treated by a dermatologist and receiving light therapy treatment. Although it did help somewhat, I had to quit when I could no longer trust my vision and ability to drive. Although my dermatologist misdiagnosed me three times before another biopsy said it was sub-cutaneous T Cell Lymphoma. She did try to get an in-home light box for me, but SS would not pay for it. Due to my whole-body condition, I require the full enclosed light box.
So far, I find that although you can live with this condition, it is far from pleasant. I am very intolerant of cold weather as it sets pins and fiery needles sensation in my arms and legs. I am pretty much a recluse all winter and only venture out when temperatures rise above 70. (Sorry for the long note. I guess I suffer from boredom and loneliness too.)